The Shout Box: Fecking Chronic Fatigue?

Beneath is what I replied to the Guardian article today about Chronic Fatigue. I didn’t actually read all of the article, because it was making me incensed after just a couple of paragraphs: same old. I’ve said it before and it’s worth repeating, but never again; I just can’t do it any more.

Excuse the bad language in the title and at the end; I didn’t put that in the comment, but it’s also worth repeating (by the way, go over to Vox Political as there was an article concerning it there also; minus the swearing):

Believe me. When I was denied physical treatment 3 years ago, because a psychologist previously insisted that his research SUPERSEDED ALL other research on the disease, even sending me psychology appointments when I had dislocated knee cartilages (weak muscles have this effect on all joints), I explained to him that his research was skewed, because people like me were much too ill to engage in his ‘2 day week’ programme with mornings spent in the gym and afternoons in lectures about pain [denial] – completely laughable to anyone who genuinely suffers with this severe neurological condition.

I explained that I’d be back at work earning a good income as a community teacher if I could achieve that! I suggested that I’d last no more than a few minutes, then I’d have to go home. Since then I’m blocked from access to any orthopedic surgeon; I get psychology appointments instead. THAT is the sort of discrimination I and others face.

I explained to that psychologist a few years back however (who COMPLETELY controlled access to the Rheumatology department), that there are proven peer-reviewed studies that reveal the dangers of forcing exercise on people with this illness. Many are existing in heart failure; that’s why they feel a little better if they lie down and raise their feet: after all, the heart is a muscle too.

Low and behold, what happens to me this year? Yes, you guessed it, some kind of heart disease; something these sufferers commonly die of each year. Ignoring such evidence puts peoples’ lives at risk. My G.P. has solely had to treat me because not even the cardiac department believed me; I could have died, and could still die. You wouldn’t let your dog go through what I suffer with my heart and the bowel. My treatment was so bad – along with so many others – that I was asked if my experience could form part of a submission to N.I.C.E. a few years back.

Despite coming from a generation that was taught to highly respect their doctors, and never having raised my voice or said anything disparaging to them (yet they think they can shout at you!), the systemic prejudices surrounding this illness result in causing much suffering. I’ve never even ever had any diagnosis! ‘Chronic Fatigue’ does not encompass all that is concerned with this illness, rather fatigue is something people can recover from, but ‘fatigue’ is NOT: bowel spasms, spending 3 days living on the toilet because you can’t ‘go’; muscle spasms all over the body that leave you unable to move and damage muscles; extreme muscle pain weakness; myoclonic jerking in the legs that make you fall, the hands that make it hard to eat or hold a drink, the jaw that makes you bite your tongue and mouth cavity; severe cognitive function, leaving you unable to understand or be understood; general bowel and stomach problems because the digestion process slows down completely; inability to sleep due to pain and complete discomfort; inability to walk far at all, and if you try a little, you can end up house bound for months; feeling of having the worst flu you’ve had in your life; cartilage problems all over the body; heart and organ failure = chronic fatigue then eh?

I don’t know why I bother replying; I won’t do it again; no one will be bothered with it anyway, and the trolls will be in force, with their so-called expertise, like they obviously know everything about it. It’s clear that after all of this time, the opinions of the psychiatrists and psychologists – who are making a ‘killing’ out of this genuinely physical illness by the way with their quackery – control the whole situation.

Over 6 years ago, there were 5000 or more studies that fly in the fact of their voodoo ‘GET’ therapy. I don’t know why scientists bother researching it any more, because we just keep reading this sort of tosh, year in and out. Meanwhile, hundreds of thousands of lives are ruined; many dead.

And no, by the way, I’m not depressed, I’m bloody angry. I wasn’t depressed in the beginning, but I did have a nervous breakdown in the 90s, um, because I was suffering what is called as ‘the worst pain known to man’, an unbearable pain, and because I was crying due to it, they assumed it was depression, so I was left UNTREATED with a pain that people have committed suicide to escape from. I had to pay private for that diagnosis, then hospital had to act. 20 years later, a so called pain specialist tells me that I don’t suffer from it (despite being treated by the hospital), that my degree, my condition, is a fantasy; the spasms just based around panic attacks.

Ah. I’ll just shut up now. This is what we’ve had to face. This is why there is so much anger in the community. But well done some G.P.s, and the odd neurologists, that have sought to genuinely treat what they can. Despite what I face, I wouldn’t be alive now, unless they had gone against what mental health ‘specialists’ wanted to push on seriously ill people. Thank you so much: I wish there were more of you!

Fecking Chronic Fatigue? My arse.

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10 thoughts on “The Shout Box: Fecking Chronic Fatigue?

  1. By the way, I realised that I missed out ‘neuropathic pain’ and the sensory problems that make your skin crawl as if you’re covered in bugs, leave particular nerves in the body in excruciating pain, and makes touch actually hurt, so that I can’t wear certain types of gloves for example or bear anything against my skin at times. I’m on the top amount of meds for that, and have to change soon as they are not working; they’ve never fully worked.

    As well at that, I’m heat or cold sensitive in a literal way, and if you become either, it can exacerbate all symptoms and it takes some time to warm up or cool down. I also get ‘hot spots’ so that my ears can turn bright red and burn so badly that I need an ice pack placed for hours on them; this also happens to my knees and sometimes my face.

    The leg jerks happen at night in bed (as well as the day) because they’re brought on by touch, which can constantly make you wake up, literally, with a jump!

    Ah well, as I said, what’s the point? She doth protest too much! I’ve tried all approaches with doctors, and at my most calm and logical I was accused of being a fantasist ha ha ha! I must remember to take my degree certificate to my next neurology appointment…

    Liked by 1 person

  2. Reblogged this on perfectlyfadeddelusions and commented:
    They used psychiatrists to diagnose ME and well neurological doctors are rude about mental health. The doctor told me that it cant be anything else but it’s all in your head.

    That is how people with mental health problems are treated when they have something physical. That is why I hate going to the hospital and seeing doctors.

    Like

  3. Strangely doctors don’t seem to understand pain. When my arthritis was bad I found the lightest touch caused pain and I could hardly move because ordinary movements were painful. If someone had suggested exercise to me in that condition I would have cried. Everyone with the conditions described needs specialised care tailored to that particular person. The NHS is never going to provide this, nor for any other condition which is not immediately life threatening. The cheap option is to claim it is psychosomatic and offer a talk cure. A witch doctor would do more.

    Liked by 1 person

    1. I call the pain specialists the Pain Deniers. Why companies can’t develop pain killers that are non addictive I’ll never know, but that said, having taken my cat to the vets over this year, they have much better and more efficient pain killers (that don’t stop you from going to the loo for weeks at a time). Whenever you broach the issue of pain, even with a G.P., it seems the case of ‘grin and bear it’. Well, ‘grinning and bearing it’ is what’s ended up affecting my heart badly; you can’t suffer severe bouts of pain over a period of time and expect your body to cope.

      Thanks for your comment!

      Liked by 1 person

      1. The trouble with nerve pain is it is very difficult to deal with. When my late husband got shingles after his cancer treatment the first time, nothing helped. And medications can give you other worse problems. Which is why I shunned medication when my polymyalgia rheumatica morphed into rheumatoid arthritis – I have got cataracts due to the cortisteroids, though they don’t affect my sight yet. I decided I had enough problems without adding to them. I used natural remedies, natural anti-inflammatories such as rose hip, and my RA is now in remission. But you have complex problems which complicates things. Things like body brushing and massage can make you feel better – except with nerve pain the slightest touch is painful. I found warm baths, swimming and aquaeorobics helped my arthritis, except I could neither get into a bath or out of it. I have also used those chair massagers, some have a heat component, designed for drivers. A substitute for massage when I couldn’t stand touch nor exercise. They are reasonably priced. And yes. It gets you down. When my arthritis was bad I got very depressed which is not normal for me. I don’t think it was psychological but caused by the condition. When you have all these things happening to you at once you do see red when doctors fob you off – I did.

        Liked by 1 person

      2. Glad to hear that your RA is in remission at present; that must be a great relief.

        I was prescribed Amitryptaline and Garbapentin for the nerve pain, but they kept having to increase it. It takes months for them to work, and it would be impossible for me now to not take them; the only option is cannabis, which did work some years ago, but I couldn’t do it to my family; it would break my mum’s heart if I got caught.

        It sounds like some of the solutions to your condition hold their own problems; similar here. I can’t swim as the chlorine triggers my asthma badly now, and I doubt if I could swim a width due to the muscle pain. Similarly, a body brush would be agony! I can’t use baths due to falling, and also the heat makes my symptoms worse (that’s why they think it may rather be M.S. with M.E.). I’ve also wanted a massage chair, but again, my muscles and believe it or not my heart problem won’t stand it! Grrrrrrrr!

        Yes, I always used to say that my bouts of depression have been caused by my condition, NOT the other way around. But doctors, even cardiac consultants, seem to think that crying is a sign that it’s connected to something else; der!

        Ah well, we’re still here eh? Goodness knows how. It’s actually made me very strong in many ways.

        Here’s wishing that your remission continues! I had a remission (again, this is why I think it’s more M.S.) twice now, but this time around it looks like the symptoms are here to stay. I’ve accepted that now.

        x

        Liked by 1 person

  4. I definitely know my depression was caused by the RA, as it went as soon as I went into remission. It sounds like cannabis could help but I wasn’t going to suggest it for obvious reasons. When I was depressed I was on a downward slope so I am very glad the symptoms abated, it was getting so I couldn’t cope. I was starting to despair. I don’t know very much about MS, ME. or heart conditions. I will watch out for anything of interest on those conditions. Are you allowed alcohol? I use hot toddies, with whisky to abate flu at the first symptoms. Rather than trust the flu jab which made me very ill one year.

    Liked by 1 person

    1. With MS and ME being an autoimmune disease like RA, the symptoms apart from the pain, are very similar, because your immune system is basically attacking you. ME and MS are very similar.

      I’m really glad then that the symptoms have abated because depression is an awful thing to have to cope with on top of an illness. The good thing is that I’ve had a lot of therapy over the years, so when I feel myself going into a spiral, I can get myself out of it. I now cope with a tremendous amount of suffering with little depression at all, although anxiety – due to horrific family problems which have brought to bear psychological punishments (gaslighting, blackmail; you name it, it’s been done to me) – has also been a big problem, but that person is on a long term section now. It’s mostly not her fault as she was a victim of csa, but she is still responsible for her actions! If it hadn’t been for the mental health issues and all the trouble she’s caused for dozens of other people, she’d be in prison now. That said, at present I’ve got on top of the anxiety and learned of a way to deal with that family member, and I just approach things as they happen now, and try not to look too far ahead, especially with the cuts looming.

      Ahem…I’m not supposed to drink with one of my new heart tablets, but it did say that it woudn’t harm me if I did drink (I’ve always called the chemist every time I have a new prescription, because I’ll be damned if I’m going to be denied a tipple!). I just built it up very carefully.

      Ah, a woman after my own heart indeed! Hot toddies are the best, although I love a malt whiskey. I’m into real ale as well. For a while, I’ve been drinking brandy though, as it relieves my stomach problems somewhat. I have cut down though, as it was getting a bit out of hand to be honest, so I’m aiming just to have a drink twice a week, Thursdays and Sundays, and I’ve cut down what I drink on those days. I find that if I avoid Friday and Saturday – the traditional drinking nights – I can moderate my intake.

      Right from the beginning I realised that there was something in alcohol that relieved my symptoms, especially the fatigue. I wish the drug companies would cotton onto that, they’d make a fortune, but I’d rather have the little tipple thanks!

      I can’t risk flu now, and though I hate the vaccines, the flu itself could kill me very quickly. I had a bout 6 years ago, before I was as ill as I am now, and it was a nightmare existence for 6 weeks, causing massive spasms and nerve pain. I too find that whiskey definitely helps the symptoms and shortens the onset of a virus or infection; again, there’s something in that! What is strange, is that whereas the whiskey may make me tipsy when I haven’t a cold, it doesn’t affect me at all when I do have a cold; similarly the brandy when I have my marathon 3 days living in the toilet sessions.

      Right, off to chill now. Thanks for all your replies; it’s been so interesting to talk to you. I love to hear about people’s lives, no matter what their circumstances. I’ll probably not be back on here until Sunday now, so I’m wishing you a good couple of days and will speak soon. x

      Liked by 1 person

  5. Yes, I’ll sign off now too. I’ll check out the connection between MS and arthritis as auto-immune conditions. Perhaps some of the things that helped me will help you. Thanks for the conversation I enjoyed it. We’re a typical pair of old birds talking about all our illnesses. All the best.

    Liked by 1 person

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